Life with MS & EDS

November 20, 2009

It’s my 1st MS-iversary

Filed under: Uncategorized — by mseds @ 6:28 am
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Today marks one year since my eye doctor called at 7:30 a.m. the day after my brain MRI to tell me I had MS.  I’ve been thinking about this a lot this past week and took a moment to reflect on all of the things I learned this year in addition to learning tons about Multiple Sclerosis.  In no particular order:

I learned that I am stronger than I thought I was!

I learned that I could get used to doing shots, although thank goodness for the AutoJect!

I learned that I could bond with people I’ve never even met and that they can offer an important source of support.

I learned that my analysis skills come in handy in my personal life, too.

I learned that there’s a whole other reason to hate my thighs!

I learned that I like my specialist better than my general neurologist and that having someone who knows a ton about MS makes a huge difference.

I learned that there are others like me out there who have both Ehlers-Danlos Syndrome and Multiple Sclerosis.

I learned the importance of ensuring docs also check the spine!

I learned that Copaxone doesn’t work for me and that sometimes it is necessary to change drugs.

I learned to time the arrival of drug shipments with something you really want to get.

I learned that one can eat an amazing amount of food while on steroids!

I learned that friends will gladly walk a few miles with you and help you raise money to battle your disease and that this provides a great excuse for a girls’ weekend!

I learned that it’s the little things in life that warm my heart.

I’m constantly reminded that I have fantastic friends and family.

Thank you all for being there for me!  It’s been a crazy year with a decent number of ups and downs and I truly appreciate you all.

August 26, 2009

Not Lyme!

Filed under: Uncategorized — by mseds @ 5:45 pm

On Sunday Little Sister complained that her thigh itched.  She scratched it a lot, so I wasn’t surprised it was red when I looked at it.  Same thing happened on Monday.  Last night, however, she was watching bed-time video and I got a good look at it.  It was a huge red bull’s eye on her inner left thigh.  I of course promptly Googled “red bull’s eye rash” and the hits were all about Lyme.  Lovely.

I called her primary doctor and explained what I saw.  A nurse called me back within 5 minutes and said to bring her in first thing this morning.  Little Sister has seen so many doctors for so many things that I always feel terrible dragging her to yet another appointment!  She was momentarily excited that Mommy was taking her to school today for a change, until I told her we had to stop by the doctor’s office first.  The she was quite upset!  I did was any good mom would do – bribed her.  I said we’d get a treat afterward for on the way to school.

The appointment went well.  Of course when we were there the rash looked far better than it did last night.  It wasn’t as red, wasn’t a bull’s eye (knew I should have taken a picture so they didn’t think I was nuts!), and was generally not too bad.  The doctor did think that there was a skin infection though.  It’s red, warm to the touch, and not as symmetrical as a Lyme rash.  He prescribed an antibiotic to take for 7 days and told me to keep an eye on it.  Hopefully this will improve quickly and not turn into anything worse!

July 29, 2009

Making Promises

My girls were schedule to have their first swim lesson yesterday afternoon.  Neither knows how to swim and both are terrified about the idea.  Little Sister had some exposure to pools when she received water therapy.  Her occupational therapist was awesome and actually got her to go under water a few times.  But, the relationship between the hospital and the pool wasn’t going well.  We’d show up and the facility wouldn’t have the appropriate chemical levels in the pool or something else would go wrong and we’d have to leave.  Do you know how hard that is on a little kid who got psyched up to do something and thought she’d have fun, only to see the pool and be told you can’t go in?  Or how hard this is for the mother who got her daughter all ready to go, including picking her up early from school and driving 30 min. to get there?  After this happened a few times, we ended up on land for the rest of those O/T sessions.  Taking a gamble on the pool just wasn’t worth the potential disappointment.

It’s been about 18 months since Little Sister had a chance to do much in a pool.  We’ve been to a couple of pool parties, but it’s hard to find a pool warm enough for her to go into.  She turns blue very quickly.  A few months ago her school had a pool party at a warm water pool that is on the location of her day care site.  My husband and I got to chatting with the lifeguard who mentioned they did swim lessons.  It’s a senior citizens’ therapy pool, so they keep it warm enough for her.   Heck, I’d love to use it!  The water is kept around 90 and the air temperature was in the high 80’s.  I know warmth and MS are not a good mix, but also having EDS throws a wrench in what makes a perfect temperature.  The pool I used to exercise in was kept too cold for my comfort.  I’d also be blue after a while and my toes would cramp up so badly I’d have to call it quits.  But, back to the point…

I called the pool just after the party, but the two instructors were not available and I was told to try back in a couple of months.  So, I called again a couple of months ago and didn’t hear back.  I’m sure the voice mail wasn’t received.  I called back just recently and got the names of the two instructors.  I called the first and she was able to do four semi-private lessons with us. She could even do one before we left for Disney (where we’d have a pool at the rental house for a week for them to practice and get more comfortable.)  AWESOME!

Yesterday Big Sister comes home from camp and we rush to get her ready for her lesson and head out to get Little Sister.  Big Sister was so incredibly excited.  She even made a picture for the teacher instead of doing free swim at camp that afternoon.  She also admitted to ducking swim lessons at camp in favor of a different sport instead.  But, she was excited to learn how to swim and even promised to try to go under water (the theme of her picture).  We hurry over to daycare and rush Little Sister out the door.

We drive around to the other side of the building, not wanting to have to walk through it all wet on the return.  We go in and pay for the lessons and head off to the locker room to change Little Sister.  I think I got a funny look or two from the older ladies who realized I was still changing diapers on someone her age, but I just smiled and kept moving along.

Then we had out to the pool.  A couple of women were doing laps, but no sign of the teacher.  A gentleman was cleaning the deck, so I asked him if he know anything.  He was very nice and made a call, but didn’t have any indication that the woman was coming.  I had already left her a voicemail message from my cell, but she didn’t call back.

So, after waiting for 15 minutes, we gathered our things and the girls began to cry their little eyes out.  I felt so bad, but I was also really, really angry.  People really shouldn’t make promises to kids and then not follow through.  The girls cried the whole way home.  I had them keep their suits on, so they hopped into our oversized tub when they got home, but that wasn’t the same.  We felt so bad that we even got them McDonald’s for dinner.

I sure hope the girls are willing to give this another try soon.  I’m not giving up until they are comfortable around water.  I love to swim, although I rarely get to do so.  I can’t wait to have access to a pool for a week.  I hope to be able to teach them a little bit this week and hope that their cousins, who love to swim, will rub off on them and teach them a trick or two.

July 28, 2009

New Shoes

Filed under: Uncategorized — by mseds @ 10:12 am
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What’s the best way to ease the arrival of your next shipment of MS drugs?  Order something you can’t wait to get to arrive at the same time!

This morning the big brown truck drove past my office window and instead of feeling glum about it, I raced upstairs and greeted the driver.  In his hands were two boxes: one marked “PERISHABLE!” and the other containing what I really wanted – my new shoes!

It occurred to me that it was finally time to part with my beloved Dansko Lolitas.  This is their 6th summer with me and I wear them almost every day from May through October.  They are starting to show their age:

Good-bye Lolitas

Good-bye Lolitas

I got them the summer before I became pregnant with Lil Sister.  I was finally in a place in my life where I could upgrade from Payless and get a decent pair of shoes.  I had heard many people I know talking about Dansko and decided to check them out.  I went to this fantastic shoe store in Congressional Plaza on Rockville Pike and started trying on shoes.  I instantly fell in love with these Lolitas.  It was hard to justify spending around $100 on sandals, but handed over the credit card anyway and haven’t regretted the decision.

A good pair of shoes is worth every last penny. Contrary to what my closet may look like, I’m not shoe person.  I buy shoes as much for comfort as for how they look, with comfort pulling rank.  I’ve tried buying other shoes in the past, but they tend to sit in the closet.  Since I can’t wear my sandals year-round, I have two other shoes that I’ll wear: my Clark ankle boots and my Lands’ End mocks.  When I found out they were discontinuing my favorite Clarks, I went to the outlet and managed to find one of the last pairs in my size.  I’m not sure what I’m going to do when those wear out.  Once I find something I like, I’m hooked and it’s hard to change!

That leads me to this morning.  I tried to buy another pair of Lolitas yesterday.  Of course it’s July and stores are clearing out sandals to make space for winter items, so selections were slim.  I wasn’t about to drive down to Maryland to get new shoes, so I had to find a new place up here.  I called around and the Walking Company store near me seemed to have things left in my size.  The guy there was really nice, but nothing in stock appealed to me.  I headed home and went to their website instead and searched around a few other places, too.  Turns out the Lolita is being DISCONTINUED!!!!!  WAHHHH!!!!

I need new shoes as we are heading to Disney in two days and from the looks of my current shoes, I’m not sure they’ll take well to 9 days of walking.  The Walking Co. will ship overnight for $10 if you order by 3.  I found a new pair of shoes that seem to be the replacement for the Lolitas called the Moriah.  So, at 3:02 I placed my order (was later than I hoped) and sure enough they were here this morning with my Copaxone.

I have them on now and LOVE them already!  Lolita and Moriah will accompany me to Disney and I hope to be able to part with Lolita permanently while we are there.

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